Ok, this is only my second cycle .. but I thought I knew what to expect.  Since it's been 5 years since my last cycle ... I know I forget some things but ...

The first week was pain, always while sleeping that woke me.  I thought at first it was a toothache, sinus infection, you name it ... just not clusters.  It hurt, but didn't hurt like CRAZY.  I was in denial and popping sinus meds like crazy. 

By the second week, I was waking up in agony.  I knew for sure it was clusters and started taking the imitrex shots that I had held on to for 5 years.  They worked like a charm, which further confirmed for me it was clusters.  I called my doc and got a new script for Imitrex as well as ordered O2. 

The doc's office dropped the ball on both requests (even though the doc had approved it) and it wasn't until a week later I got the Imitrex, then followed by the 02.  My script for Imitrex was only for 2 shots ... burnt them in two nights. 

In the meantime, I started getting hit durning the day ?????????  I'm not used to that, as my last cycle was strictly at night until I was going out of cycle.  I was also used to only getting hit once at night (a good one).  Last night I woke up 4 times and had to hit the 02 .... WTF ????

I had called the doc again to see if they could do the letter of medical necessity, and she suggested I try something new.  Trexemet (imitrex pill form with some Tylenol thrown in).  They seem to help, but I need the 02 to get the headaches down to a manageable level while waiting for the pills to kick in.  So I did that another few days. 

Bottom line.  I'm off work cause I'm exausted, and getting hit during the day as well as at night.  I tried doing o2 all last night with no meds ........ and still got three headaches before finally doing the Trexemt.  Had a headache again during the day today.  Went to bed tonight and got a banger ........  Any suggestions ???????   

We have a saying about the beast...the only thing predictable is it's unpredicatbility. The first 20 years of my cycles i NEVER had a wake up call. Those didn't start until my 40's!

I get the come backer headaches after shutting off the 02. I've found that drinking a Red Bull while aborting with the oxygen seems to keep the come backer from showing up. Might be worth a shot.

Joe

Hello,

How long are you staying on the 02? Maybe you should stay on for a full 15=20 minutes even if the hit is gone in 5 minutes. I think that may help. Same thing has happen to me, and going a little longer on the 02 helped.

Best, Coach Bill

Just got another banger, (seems I only last and hour at most in bed) and tried to stay on the 02 longer this time.  I'm also having a cup of strong java with it.  I've used 1/3 of an M(?) tank in three days.  Is this normal?  I know for sure that my throat and nose are really really dry at this point.  I also know my new puppy (almost 6 months old) is NOT liking when I trash around the way I do.   :'(  I'm gonna need sunglasses to cover these bags in the morning !   8-)

I do have the non-rebreather mask and I'm going at 15 lpm. 

One Eye, That all sounds very very familiar.

The Beast morphs and changes tactics as he goes along. I never had an attack between the hours of sunset til going to sleep for the first 23 years of my CH. Then you know who decided to change the game.

Your O2 experience sounds just like mine. I wish I would've seen Giussepi's suggestion about the energy drink to keep the rebounds away last summer when I was getting hit every hour after going to sleep. Seems worth trying to me. keep in mind the energy drinks also have taurine, and some CH folk believe that to be part of why they work.

You really might benefit from a higher flow regulator too, one that goes at least up to 25 LPM. You may use up the O2 even faster with it, but in my book that is normal.

Also you might try Melatonin at night (9-15 mg). May take a few days to kick in, but it's been a great help to me for night hits. I very seldom have one since I've been taking it (several years now). HA hit during the REM sleep and the Melatonin gets you thru that.

Are you using the NON-rebreater mask for the O2 and what liters are you using? 15-25 lpm is the recommended and the MASK is VERY important.

And don't LAY in bed when you wake up -- get up and walk around... Laying there seems to just get the beast going.

Keep us informed on how you're doing. :-*

May want to ask the Doc for some Amerge or Frova.  They are triptans similar to Imitrex but have a much longer half life.  They may keep the night bangers from returning.

Where would all the fun & excitement go if we got hit regularly, same time, same place????? Hit patterns, times, frequency, severity and also meds that work and dont change ALL the time for many of us here.

It sounds to me as if you are currently only working with abortives and as if you should discuss your preventative treatment regime with your doctor.

One topic of discussion could be a prednisone taper to halt the pain for the time it will take for your choice of prevent to reach therapeutic levels. Prednisone will only mask the pain while you are taking the course and generally after you taper down, the pain will return. Some have reported their cycle broken after a prednisone taper, but it's rare. It therefore is merely a transitional treatment.

Many here favour Verapamil, Topamax or Lithium as preventative. They all require several weeks to take effect.

There are more prevents you can read about here, but many tend to start with one of the above, often with Verapamil at dosages of around 480 mg or so, after consultation with their doc and typically preceded by an ECG. Most favour the fast-acting over the sustained release version.

Good abort advice above.  I'm with Neuro on this one though.  It sound like it's time to find a preventative med that can give you some peace.  Have you tried this route before?  If so, what did you use?

It also sounds like your Dr doesn't really know CH.  Treximet, as you've found, isn't a CH med.  It's too short lasting to take ahead of time and too long in providing relief to be of any use aborting the damn things.

Sounds like he's a GP.  Get a referal to a Neuro.  Preferably a headache specialist.  Unless I'm reading this wrong all he's going to do is delay serious relief for you.

I hope you get some PF time soon and then another 5 year break...

-Dennis-

When getting hit at night a lot I sometimes will sleep sitting up in my recliner.  I've found it to help stop the night hits.  Not perfect, but helps.

I'm with the others on your need for a prevent.  I've gone the non-med route and use Kudzu.  I found it was quicker responding than Verap, and without the side effects. 

Jerry

All I know is that you have to learn to expect the unexpected!

A Doctor once said to me "We know a lot about a little, and a little about a lot"

All the best

Iddy

I also will sleep sitting up in a recliner and usually in my  living room with the lights on and the tv/radio making noice.  For whatever reason, I think that makes my hits shorter and less frequent.

Energy drinks with TAURINE and CAFFEINE tend to work best at the very beginning of headache!
Good luck

Ok, I've read all the responses (and forgive me if I don't address your response specifically ... I appriciated them all). 

My doc did prescribe Verapamil for my last cycle.  Unfortunately, after going for so long I threw that script away.  I'll ask for a new one.  And yes, she is a GP .. but she listens to me, and was really good the last cycle with any suggestions I had to make based on receiving info from this site.  I'm lucky there. 

The o2 is going at 15 lpm's with a non-rebreather mask, but I'm not having much luck with that.  I did do a whole night with nothing but o2, but ended up getting hit over and over again.  The headache would go away, I would go to sleep, headache wakes me up ... o2 again, back to sleep ... you get the drift.  No imtrex or other abortives were used (and I'm not on any other meds) for 24 hours and the o2 just wasn't cutting it.  Perhaps I do need a higher flow rate,; but Apria (o2 vendor) told me that they don't have a higher regulator available.  I can try the Red Bull as suggested, any other input on that would be appreciated.  I'd really like to stay off any drugs ... but, I'd also like to SLEEP !  :-) 

Thanks for the suggestion on the amerge and flora. I can ask the doc for those, since abortives seem to work pretty well for me for now. 

Again, thanks for everyone's response !  And Happy Easter to you all.  I'm out of abortives .... so I'll pick me up some Red Bull and call it an Easter party tonight !   :D

The O2 won't prevent you getting hit, but should manage to abort reasonably fast. If not, can get a new higher flow regulators on ebay.

Drink Red Bull at the very first sign of attack.

OneEyeBlind wrote on Apr 4^th, 2010 at 11:46am:

Perhaps I do need a higher flow rate,; but Apria (o2 vendor) told me that they don't have a higher regulator available.

Try and go to Ebay for the regulators and other O2 supplies. Some have had great success by-passing apria and the likes using this route. :)

Much Luv and PF Wishes My Friend,
Pfunk 8-)

You threw away the script?  Once you have got it filled the first time, doesn't the pharmacy keep it in their records?  Call and find out if you have refills avail, if not they should call your doc to see if they can refill.  A decent pharmacy will do the work for you.

Pfunk tells it like it is regarding regulators.

I've used Apria too, and no they don't have hi flow regulators, so I went around them and ordered one, plus a non rebreather mask with reservoir, online.

I do have the non-rebreather mask with the bag underneath.  Had to have Apria make another stop with that after they delivered the first time.  But my mask looks just like the one pictured in the 02 link ... so I think I'm fine there.  I'll look in to getting the higher regulator ... I think I might have a source for that. 

As far as the verapamil, I'll call the doc tomorrow.  I'm sure she'll write the new script.  I also think I can use my husband's insurance to get some more Imitrex until stuff starts kicking in. 

I have a question on that I'm gonna post in a new thread (dual insurance)

Sounds like you need a new doctor!  My neuro will cancel other appointments to fit me in when i call about a new cycle, and preventatives are always started immediately along with a Medrol dose pack.  I hope you find the help you need soon!